History of the POHA
The History of the POHA: Progressive Osseous Heteroplasia Association
Major Events in History of POHA
March 1994
Progressive Osseous Heteroplasia (POH) is discovered and named by Dr. Frederick Kaplan at the University of Pennsylvania Medical School in Philadelphia.
July 1994
Katelyn Jacobs visited Dr. Kaplan in Philadelphia and was diagnosed with POH.
April 1995
The Progressive Osseous Heteroplasia Association (POHA) was incorporated in the State of Illinois.
June 1995
The first POHA meeting was held in Indian Head Park, Illinois.
August 1995
First POHA fundraiser was held (Bowl-a-thon) and made $3,000.
September 1995
IRS approved POHAs 501 (c)(3) status making all donations fully tax deductible.
October 1995
First POH International Workshop was held in Philadelphia in conjunction with an FOP Symposium. Three POH patients and their families attended plus 60 doctors/scientists. The POH Collaborative Research Project was formed at the University of Pennsylvania with the purpose of finding a cure for POH.
March 1996
First Katelyn Foundation Benefit for POH research was held in Chicago and attended by 650 people.
April 1996
The “No Bones About It” fund raising Run/Fun Walk was held in Frenchtown, NJ by the Ian Foundation/POHA.
May 1996
POHA approved and funded the first ever POH research Grant of $100,000 to the POH Collaborative Research Project at the University of Pennsylvania, covering the 2 year period July 1, 1996 to June 30,1998. Dr Fredrick Kaplan, M.D. and Dr. Eileen Shore, Ph.D. were the co-investigators
September 1996
Through the efforts of Sandy Roth, the mother of a POH patient, POHA is selected as the 1996/1997 Charity of the New Jersey State Association of Student Councils.
April 1997
POHA published “What is POH” a 46 page guidebook for POH families and other interested parties. This guidebook has been updated to 2002.
February 1998
Second Katelyn Benefit for POH research, attended by 600 people, was held in Chicago.
July 1998
POHA approved a new 3 year $150,000 extended research Grant to the POH Collaborative Research Project at the University of Pennsylvania covering the period July 1,1998 to June 30, 2001.
Summer 2000
The discovery of the gene (GNAS1) responsible for POH.
September 2000
The second POH Workshop in Philadelphia was attended by 9 patients and their families plus approximately 200 doctors and scientists from around the world.
November 2000
Official announcement and publication of articles in medical journals about the identification of the damaged gene (GNAS1) responsible for POH. Researchers from the University of Pennsylvania, John Hopkins University and the Shriners Hospital in St. Louis (Washington University) participated in the event.
February 2001
Third Katelyn Foundation Benefit for POH research was held in Chicago on February 17.
July 2001
POHA approved a new 3 year $150,000 research grant to the POH Collaborative Research Project extending the period to June 30, 2004.
Fall 2001
The National Institute of Health (NIH) approved a 3 year $728,000 POH research grant to the University of Pennsylvania.
October 2001
The Italian Progressive Osseous Heteroplasia Association (IPOHA) was established by the Doctor/father of a POH patient to raise tax-exempt funds in Italy for POH research.
January 2002
The New England Journal of Medicine published an article by members of the POH Collaborative regarding the discovery of the gene (GNAS1) responsible for POH.
March 2002
Johnson & Johnson approved a 3 year POH research grant to the University of Pennsylvania.
November 2002
Dr. Roberto Bufo forwarded a $3,500 check representing the 1st year of fund raising for the recently formed IPOHA (Italian POHA),
April 2003
A POH web site (pohdisease.org ) is now in operation There are currently approximately 50 patents identified with POH and the POH Collaborative has been expanded to include 29 researchers at 15 hospitals and universities in 5 countries.
Fall 2004
The National Institute of Health (NIH) extended their POH research Grant for another 5 years
November 2004
Fundraiser by Lyons Township Swim Team benefiting the Katelyn Foundation for POHA raised $4,600.
March 2005
An anonymous donor’s final payment of a 5 year pledge of Waste Management/Coca-Cola stock resulted in a total donation of approximately $25,000 for the Katelyn Foundation – POHA
March 2005
The 8th annual Tom Sullivan Family Poker Night for POHA raised almost $2,000 for a combined total of over $15,000 for the 8 year period.
March 2005
POHA was awarded another 5 years of Illinois sales tax exemption.
July 2005
Funding of POHA’S 10th year Grant increases POHA’s total Research contributions to over $500,000
July 26, 2005
New York Times (Science section) contained an article about Osteoporosis and how bone marrow cells are replaced by fat as people age. While not the focus of the article Dr. Kaplan and Dr. Eileen Shore‘s research is mentioned and Dr. Kaplan is quoted.
September 2005
A Fundraiser/Picnic with 450 people in attendance raised $33, 500 for the Kathelyn Foundation (POHA)
April 2006
Discovery of the muted gene that triggers FOP (POH’s sister disease)
Winter 2007
POH Guidebook for Families was translated into Italian and added to the website
June 2007
POHA approved another 5 year Research Grant ($50,000 per year) to the POH Collaborative Research Project at the University of Pennsylvania, covering the period July 1, 2007 to June 30, 2012
April 2008
POHA received a check for $4,100 from the IPOHA increasing their total donations from Italy to over $20,000 in the last 6 years. Congratulations to Dr. Roberto Bufo and family
May 2008
Congratulations to Lori & Lanton Lee and their daughter Margaret for raising over $20,000 for POHA (Walk for Margaret).
October 2008
Congratulations to Chris & Brian Fennell and their daughter Erin for raising over $35,000 for POHA (Casino Night for Erin’s Cure)
Winter 2009
The Italian version of “Thesis of Specialization: POH” a Case Study by Dr. Roberto Bufo, parent of a POH child
August 2009
The IPOHA contributed $14,000 to POH research
November 2009
The current Officers and Board of Directors of POHA announce they will not seek reelection in 2011. Therefore a completely new Board will have to be elected at the November 2010 Meeting.
June 2010
The IPOHA advised us that because of the Italian Government becoming more involved in the fund raising it will be necessary to give directly to the POH Research Lab.
July 2010
Cara Watkins became the first POH patient to hold a Fund Raiser. Atta girl Cara